If regular sunlight can kill you, you have to live by night. That’s the ethos of Camp Sundown, which has become a refuge for kids so sensitive to the sun’s rays, direct exposure could kill them, a new RT documentary reveals.
“We wanted to find other families to figure everything out, how to live our lives,” Camp Sundown’s founder Caren Mahar explains in “No fun in the Sun.”
In 1994, Caren’s daughter Katie was diagnosed with xeroderma pigmentosum (XP), a rare genetic condition affecting one in every million Americans today.
“If I get sunburned, I heal. She doesn’t heal,” Caren describes her daughter’s condition.
Those with the affliction are extremely sensitive to ultraviolet (UV) light. Standing outside in direct sunlight for mere seconds could have deadly consequences like melanoma. It can also lead to issues with hearing and sight, as well as immune system and thyroid problems.
Another skin sensitivity condition among kids in Camp Sundown is erythropoietic protoporphyria, or EPP. Unlike those with XP who are sensitive to UV light, EPP sufferers are sensitive to exposure to blue light. As blue light emits less energy than UV light, EPP sufferers can spend several hours outside if it’s cloudy. However, the effects of over-exposure are just as deadly.
It’s like a “really bad chemical burn” says Jason, a father of two and himself an EPP-sufferer. “It goes through your skin, into your muscles, all the way down to your bone.”
Attending Camp Sundown gives children a rare experience of being among peers who live the same lives, it’s a safe house from the realities of their conditions.
“They don’t have to talk about what they go through with us because we understand,” says camp counselor Shannon Kelly.
Those attending the camp engage in all the same activities as those held in the day-time, with games aided by floodlights and glow-in-the-dark equipment. Late night field trips are also organized thanks to museum volunteers opening up after-hours.
For Chris, XP sufferer who attended the camp as a child and is now there as a counselor, it’s all about having a “positive mindset.”
“We make you feel like part of a family and you just don’t want to go home afterwards, like you wanna stay forever, you know.”
Watch RT’s full documentary ‘No Fun in the Sun’.
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